fact sheet 39

Self-directed support

Support for people with

profound and multiple
learning disabilities
People with profound and multiple To get more help
learning disabilities (PMLD) have the contact In Control.
same right as anyone else to be included, Tel: 01564 821 650
Email In Control
heard, considered and understood. help@in-control.org.uk
Just because someone does not use
words, it does not mean they can’t
communicate their preferences and
Find more fact sheets at:
share what is important to them. www.in-control.org.uk/
factsheets
Self-directed support, such as direct
payments and individual budgets, has
the potential to transform the lives of
people with a learning disability. It is
crucial that people with PMLD can
benefit from self-directed support too.

This fact sheet was

produced by In Control
and Mencap as part of
In Control and Me, a lottery funded project.
www.in-control.org.uk/icandme

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 fact sheet 39
The basic facts
People with profound and multiple learning disabilities
(PMLD) have very complex needs.

People with PMLD:

• have more than one disability

• have a profound learning disability

• have great difficulty communicating

• need high levels of support To get more help

• may have additional sensory or physical disabilities, contact In Control.
complex health needs or mental health difficulties Tel: 01564 821 650
Email In Control
• may have behaviours that challenge us. help@in-control.org.uk
This is a short definition from the PMLD Network.

Many people with PMLD are often the last to be considered

when we talk about people having choice and control. It can
be assumed that being unable to speak means you don’t have
any preferences. However, families, friends and people who
know someone with PMLD are often able to identify what
makes that person happy and what makes them sad. Find more fact sheets at:
The law (the Mental Capacity Act 2005) says that people www.in-control.org.uk/
factsheets
should be assumed to have capacity to make a decision until
proved otherwise. This is an important starting point as it
encourages those supporting someone to involve the person
as much as possible in making a decision. However, the law
says that people will be unable to make a specific decision if
they cannot understand information about the decision to be
made, retain that information in their mind, use or weigh that
information as part of the decision making process. The reality
is that people with PMLD will never be able to do these things
due to the severity of their learning disability.

People with PMLD will lack capacity to make their own

decisions about the type of support they have. But this does This fact sheet was
produced by In Control
not mean that they don’t have important preferences to share and Mencap as part of
In Control and Me, a lottery funded project.
which can be used to influence decisions made about the www.in-control.org.uk/icandme

support they get.

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People with PMLD should be involved as much as possible in
fact sheet 39
decisions made about their lives. This is not just good practice
this is the law. The Mental Capacity Act 2005 says that if
someone lacks capacity to make a decision, then a decision
needs to be made in their best interests. The person making
this best interests decision will differ depending on what type
of decision it is (eg it may be a family carer, support worker or
health professional). When making a best interests decision
the law says that the decision maker should involve the person
themselves as much as possible, this means finding out as
much as possible what the person’s preferences are and using
these to inform the decision made. To get more help
contact In Control.
Tel: 01564 821 650
More information Email In Control
help@in-control.org.uk

People with PMLD express preferences

Self-directed support is not about doing things on your own.

It is, where possible, about bringing in people to help you
get support that meets your needs. We all need help and
support when planning our lives, and people with PMLD
are no different. We may just have to ‘listen’ a little harder. Find more fact sheets at:
www.in-control.org.uk/
The idea behind self-directed support is to try and create
factsheets
a bespoke and individualised support mechanism for an
individual. This can be achieved by producing a support plan
which examines what would work for a person and what
won’t. It is about using what we know and the people we
know to fill in the gaps of what would lead to a positive
outcome for an individual.

So where is the choice and control for the person? When we

ask people who know someone well they can explain how that
person reacts if they don’t like certain foods, whether or not
they enjoy swimming, or if they get bored watching certain
TV programmes. What we discover is that people definitely
do express preferences. It can just be in very subtle ways. This fact sheet was
produced by In Control
Sometimes you have to understand what people are saying by and Mencap as part of
In Control and Me, a lottery funded project.
the manner in which they communicate. Then you will notice www.in-control.org.uk/icandme

that different signs and signals often mean something.

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There is a family that for years believed that when their
fact sheet 39
daughter’s arm shot up in the air this was because of an
involuntary movement. But they started to recognise that
this only happened when she was watching motor racing
and horse racing. The family realised that fast sports were
something she enjoyed. This recognition resulted in having
fast sports added to her support plan. This had a huge positive
impact on her life.

Find ways to interpret behaviour

If you watch and listen closely, much of the behaviour of To get more help
people who present challenging behaviour is communicative contact In Control.
or a response to their environment. There are plenty of ways Tel: 01564 821 650
you can start to think about issues around communication Email In Control
and see if you can find ways to interpret a person’s behaviour. help@in-control.org.uk

For many people who don’t make noises and have limited
expression and body language we may assume they prefer
to be quiet. Therefore snoozelem rooms and softer settings
are often used to support them. However, such environments
can simply make some people nod off to sleep. But when
they are in markedly noisier locations, such as a concert,
these same people can become animated and alert. Find more fact sheets at:
www.in-control.org.uk/
Discovering who people are is the challenge, not the
factsheets
people themselves.

Learning more about a person will enable you to identify

what is important for them. It is helpful to record information
about how the person communicates and record information
gathered about the person’s preferences to help ensure this
information can be used in decision making. In order to help
people consistently support a person, producing an essential
lifestyle plan can be useful (see the factsheet on person
centred planning). People’s preferences may change though
so it is important to keep plans up to date. For some major
decisions, it may be appropriate for someone to be appointed
as a Deputy (see the fact sheet on the Mental Capacity Act). This fact sheet was
produced by In Control
and Mencap as part of
In Control and Me, a lottery funded project.
www.in-control.org.uk/icandme

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People who have PMLD have a better-quality lifestyle when
fact sheet 39
they have opportunities in their communities and can develop
relationships with people beyond paid staff. Being part of your
local community does not just mean ‘going out and about’
to local places. It also means having connections to people
and being appreciated for who you are and the qualities you
have. These aspects will also need to be considered in terms
of people living a good life.

An example To get more help

contact In Control.
Craig’s story – control to the end Tel: 01564 821 650
Email In Control
Craig had been known to services for many years. He was 17 help@in-control.org.uk
years old when he embarked on self-directed support and his
transition into adult services was imminent. In terms of his
life expectancy, Craig exceeded everyone’s expectations.
His needs were so complex that he spent his life in and out
of hospital and used the local children’s hospice for respite.
He had attended special school since the age of two and was
in the further education division of the school.
Find more fact sheets at:
Craig was offered a personal budget which had evolved from
www.in-control.org.uk/
the resource allocation system. But the amount offered made factsheets
no consideration for the fact that Craig was to leave school
and would have no support during the day. Nevertheless,
we started developing a support plan. Lynne felt it would be
asking too much of the family for it to be an employer, so
it was decided that choosing a provider would be the best
option. However, the cost of this would be more than the
indicated amount. Using the support plan we were able to
demonstrate clearly why Craig needed more funds to keep
him healthy, safe and well. This enabled an open conversation
with the council, and a revised amount of money was offered.

The family chose a provider and the arrangement worked

well. But gradually the family gained confidence in managing This fact sheet was
produced by In Control
Craig’s support themselves. After less than a year they decided and Mencap as part of
In Control and Me, a lottery funded project.
to cut out the ‘middle man’ and be in complete control by www.in-control.org.uk/icandme

becoming employers. Craig’s life was as good as transformed

over night. He had his own team of personal assistants
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who enabled Craig to take part in activities his peers took
fact sheet 39
for granted – such as swimming, abseiling, canoeing, doing
voluntary work, attending college and line dancing. He no
longer went ‘to respite’. Instead, by using their caravan at
Ribby Hall, near Blackpool, Craig was able to have a break
from his family, or his family have a break from him.

Craig’s health improved significantly and his seizures,

which used to be daily, almost stopped. Plus he put on
weight. It was evident that Craig’s team of personal assistants
were providing a continuity of care and support that he
had never experienced before. This was the vital ingredient
To get more help
that significantly improved Craig’s quality of life.
contact In Control.
His family could live a satisfying and independent life but Tel: 01564 821 650
be together whenever they chose. Mum went back to work. Email In Control
She had not been in employment since Craig was born, and help@in-control.org.uk
she chose work that used her skills to help other families.
Dad kept his job and developed a much more intimate
relationship and bond with Craig.

Craig maintained his health, well-being and lived a good

life for a further six years. Craig’s family said they were the
best years of his life. Sadly Craig died aged 23 years on 13 July
2009 from pneumonia. However, his team were at his side
Find more fact sheets at:
constantly. They provided a personalised service right until www.in-control.org.uk/
the very end of his life. factsheets

This fact sheet was

produced by In Control
and Mencap as part of
In Control and Me, a lottery funded project.
www.in-control.org.uk/icandme

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 fact sheet 39
There is a lot more information
on the In Control website:
www.in-control.org.uk

More information on support for people with

profound and multiple learning disabilities

Mencap and BILD’s Involve Me project shows how creative

approaches can be used to involve people with PMLD in
To get more help
decision making processes: www.mencap.org.uk/involveme
contact In Control.
The PMLD Network – is an excellent resource made up Tel: 01564 821 650
of many of the key bodies. It is chaired and run by Mencap Email In Control
www.pmldnetwork.org help@in-control.org.uk
For all issues relating to the Mental Capacity Act
www.publicguardian.gov.uk

Find more fact sheets at:

www.in-control.org.uk/
factsheets

This fact sheet was

produced by In Control
and Mencap as part of
About the In Control and Me project In Control and Me, a lottery funded project.
www.in-control.org.uk/icandme
A three-year project to produce accessible information for everyone who
wants to direct their own support, funded by the National Lottery through the
BIG Lottery Fund. You can find out more at www.mencap.org.uk/incontrol or
www.in-control.org.uk/icandme
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